Reimagining End Of Life Care

Imagine being able to receive fully integrated medical, social, and spiritual care in your own home. Nursing care is available 24/7. Home health aides provide basic personal assistance. Care is person-centered and focused on the specific needs of each patient. And for people with incurable chronic conditions, it focuses on managing symptoms, including pain, thus vastly improving their quality of life.

Such a model exists. There is just one catch: You need to be dying to get it. Not dying in the sense that you really want it. Dying in the sense of, well, dying. The model is hospice. Done well, it is close to the ideal system of care. Medicare even pays for it. But it doesn’t want too many people to use it.

To control costs (and prevent fraud), Medicare requires two doctors to certify you are likely to die within 6 months and you have to agree to stop treatment for your terminal disease.

Not surprisingly, this is not a deal people are enthusiastic to make. More than one-third of those who enroll in hospice wait until a week or less before they die. Most patients, and most of their doctors, don’t want to confront impending death until almost the last moment. When, of course, most of the benefits of well-integrated medical, social, and spiritual care are of little use.

At the same time, crooks and incompetents have found ways to game the Medicare system in the name of hospice, which in turn generates more restrictions from a budget-constrained and risk-averse Medicare.

There are alternatives. Palliative care, which is similar to hospice in many ways, is increasingly available in hospitals. The good news is: You don’t need to be dying to get it. The bad news is: It is usually only available if you are hospitalized. Even there, it is not easy for docs to get paid for providing it and it is poorly understood by both physicians and patients.

The PACE program, which provides well-integrated medical and social care for low-income people with chronic care needs is another, perhaps better, model since it does not focus on dying. But it has been around for years and has only about 20,000 enrollees.

For many people, we have effectively ghettoized death and dying. Medicare tries to run two parallel health systems—one for those who acknowledge they will soon die and one for the rest of us. If the medical system thinks you are relatively close to death, you are placed in an entirely separate system with its own rules. In, you might say, a box.

This only reinforces the unwillingness of most Americans to acknowledge death as a normal (and inevitable) part of life.

Few families talk about death. Few of us prepare for end of life. Many physicians are as uncomfortable with the subject as their patients. And it is all reinforced by Medicare’s crazy payment system.

Yesterday, the influential Institute of Medicine released a 500-page report on Dying in America. It included a damning description of the problem:

“The US health system is ill designed to meet the needs of patients near the end of life and their families. The system is geared to providing care aimed at curing disease but not at providing the comfort care most people near the end of life prefer. The financial incentives built into…Medicare and Medicaid…are not well-coordinated, and the result is fragmented care that increases risks to patients and creates avoidable burdens on them and their families.”

Despite its spot-on diagnosis, the IOM struggled to find a specific solution. It called for:

Redesigning Medicare and Medicaid to break down payment silos between the two programs

Coordinating medical care across settings and providers

Better integrating medical care and social services

Expanding the use of palliative care

All good ideas. But the real question is: How exactly do we redesign the health system (including the payment system) to better support people with multiple chronic conditions, whether they are about to die or not? How do we truly integrate medical care, long-term supports and services, and spiritual care to achieve the generic goals set by the IOM?

There is no easy answer, but perhaps the IOM report will encourage all of us to think a bit harder about the question.

I am author of the book "Caring for Our Parents" and resident fellow at The Urban Institute, where I am affiliated with the Tax Policy Center and the Program on Retirement Policy. I also write a tax and budget policy blog, TaxVox, which you may read at Forbes.com or at http...